(I haven’t been able to write the very last day in two years, but this year, I really wanted to preserve the memories. I want those horrible and painful hours to live here on the pages, and not in my head or on my shoulders. The truth is that those days seemed like weeks and they blur together in my memory. Here is our last day with Zack.)
We woke up after having a short break in the parent’s room and deciding that we had time to breathe while Zack was status quo. We rushed to Zack’s side to watch the numbers on the screens and try to gather the hope that we would bring him home at all.
Paul had just started his new job and we both agreed that he could run to the office for a couple of hours to “check in” and say thank you to his new team who were holding down the fort for him. I sat beside Zack’s bed and stroked his hair, cuddled with his Elmo blanket that we had brought from his crib at home and spoke in his ear…
I promised my son that I would help him start from the beginning again- if he needed to relearn how to sit and eat and walk- I would be there again.
I promised to be his cheerleader and be by his side- as long as he just came home with us. We were a team and I told him that I couldn’t live without him.
I also promised him that I loved him enough to let him go– I whispered that he needed to show me a sign that he was giving up and I would let him. I would never be mad if he had just had too much.
About an hour later, I looked at the EEG monitoring his brainwaves- I had been so nervous walking past it each time- but as I walked past it, the waves were flatlined. I remember the feeling of my entire insides turning outwards and a wave of the deepest sadness washed over me. I knew that this was it. This was the sign.
I called Paul right away and told him to come back and why- I was shaking, cold and sick to my stomach. Then the doctors came in and saw the monitor.
We talked about the choices we had- but we had none. He was gone. While his body was hanging on just barely, his brain had not withstood being without oxygen for over 45 minutes, while they performed CPR in that OR only 3 days ago.
We made the hardest decision a parent could ever make- to remove the life support from our son and allow him to take his last breath. Once we made peace with letting Zack’s suffering end, we began a long day of preparations and hospital red tape. The doctor had to call coroners, medical examiners and other administers to tell them about our decision and get “permission”. The next steps were to prove that our son was indeed “brain dead” through performing “experiments” to see if he had any reactions- they put water in his ears, put wires on his head and electrodes on his finger to shock them. It was during this test that I asked the doctor to let me hold his finger while he shocked it into moving- I wanted to feel his finger move for the last time.
These tests took all day-it was so long and drawn out- and to be honest, Paul and I just wanted it to be over. To just let him go- he was ready and we didn’t want him to suffer anymore. Even his colour changed and his head got colder. It was slow and painful for us. I remember they kept taking us out of the room to talk to us in the “grief room” about what was happening, what would happen to him after he died, where he would go, who would be with him, the autopsy procedure and even organ donation (which we did not do because of the state of his organs). The doctor even suggested that we don’t try to have another baby as a way to replace our son (are you kidding me?). In between these awful moments, the nurse took care of us. They even had Tim Hortons bring up juice, muffins and coffee for us…I didn’t quite understand that at the time, but it was their way of trying to take care of us.
The lights were made dim, the busyness of the ICU room went away and it was quiet. They helped us move Zack over to one side of the bed so that we could get up on the bed beside him. They helped removed some of the tubes and wires that were no longer necessary on his body and let us wrap our son in his blanket. I even lay with him and fell asleep beside him for a moment- our last snuggle. The SickKids nurse asked us if we would like to do molds of his hand holding our hand and I was so pleased they had this choice for us. I held Zack’s hand as they dipped us into a mold and made an impression. Zack had a crossed toe, so Paul requested that we take a mold of his unique foot. We said goodbye throughout the day- every minute was another goodbye- just waiting until the doctors removed the breathing tube. It was agony on top of the immense grief- unbearable.
At around 11pm I climbed onto the bed with Zack and held him for the last time. The doctor came to take the tube out and it was peaceful. No machines, very few wires- just Paul, Zack and me in that dark room. We took pictures of our last moments with our amazing little boy. We told him how much he had changed our lives and how much we would miss him. At just after 12:00am March 10th- we watched our son take his last breath. I pulled his arm over my shoulder in a hug, but his arm was too heavy to stay- I held it against me while I kissed his arm and his face remembering every single inch of him. The pain was unbearable and now we had to leave him in this room and walk away.
Now what? How do we leave him here? How do we plan his funeral? How do we tell his brothers that they won’t see him again. I was afraid of the road that was ahead of us…but mostly, afraid of life without Zack.